Best place to live?

[Guest guest]

,

It isn't ND either... received Medicaid until age three...but then

needs to qualify under the DD/MR classification for further help.

There is an organization www.uneedpsi.org that I believe can offer some

help, I had emailed them a while back and haven't heard from them. I

need to call again....

Minnesota has a little better help, but not a lot of

Immunologists...Just one that works with the IDF and he is busy....

We are kinda in the same boat, borrowing from retirement to pay

bills....now that I'm only working " as needed " I'm the first one

cut....Having trouble finding that new job since I have " sick Kids " , the

hospitals here are hiring New grads to fill all the open positions...the

stuff at the state is crappy pay....the clinics are crappy....I am going

to apply at Kohl's today, just to have a little money....

Then Libby asked me about a PSP player... " it's really cool mom " .....I

kinda went off on her...you have a gameboy and your dad bought you an

MP3 player...why do you need something like that..if you want that, then

You can have it is 5 months, but your Saxophone is going back...

Don't think I was much help, just know I am thinking of you...

Best Place to Live?

Just a quick question. Where do you think is the best place to live in

the

US with PID? -Valarie you already voiced your opinion for MI! :-)

Michigan

does sound like a great place with easy to obtain waivers and mileage

reimburesement. What state offers the most assistance (Medicaid

Waivers,

Beckett, etc) for this disorder? But also great medical care? As

we

continue to do immune workups on all of our kids my husband and I are

considering that if we have more than one child with PID we will

probably

need to move to a different state. Conner does not qualify for Medicaid

in

Indiana (he either has to be very disabled or medically fragile), even

with

all of his other health issues. Medical stuff is getting out of hand,

we've

used all of the equity in our home and have been on the verge of losing

everything! We don't qualify for any assistance and the hospitals have

not

been very willing to work with us. Anyone have any ideas or

suggestions?

Take care,

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

Hashimoto's disease, hypogammaglobulinemia, complement deficiency,

antibody

deficiency, NK cell defect, and resolved adrenal insufficiency), Hayden

(11, PDD-NOS, IBS and moderate hearing loss/aided), Evan (11, asthma and

mild hearing loss/unaided), and Kelsey - (9 going on 19!) Please visit

us at www.caringbridge.org/in/connersmith

This forum is open to parents and caregivers of children diagnosed with

a Primary Immune Deficiency. Opinions or medical advice stated here are

the sole responsibility of the poster and should not be taken as

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[Guest guest]

S wrote:

> Just a quick question. Anyone have any ideas or suggestions?

>

from dale,

A group that has helped a lot of PID families get the assistance they

need is called A.C.C.E.S.S. That stands for Advocating for Chronic

Conditions, Entitlements and Social Services. A program developed by

Gentiva Health Services to assist families with social and economic

problems that can develop when treating a chronic medical condition,

such as PID. Their web site is www.gentiva.com/access/ Their telephone

is 888-700-7010.

I've called them a couple of times to ask them to help me decide which

insurance company would be best to cover the most of Katy's expenses,

etc. But I've also met one of their members (Bill) and heard him speak

on our behalf (PID) at a Social Security conference on disabilities. He

was incredibly knowledgeable about our needs. They deal with Social

Services and also with insurance and just trying to help you figure out

how to get the help you need.

I highly recommend them to anyone with " how do we cover the cost of all

this? questions. I know that they will personally walk you through the

disability requirements, etc.

In His service,

Dale

[Guest guest]

:

This is a vote NOT for Illinois. I was trying to figure out if there was any

sort of supplementary insurance that would help with co-pays, and so far have

found nothing. Ped's office said they don't know of any plan that helps with

co-pays if you have existing insurance.

DH's insurance through work is getting more expensive every year, premiums

increasing, co-pays JUMPING, fewer services covered for same amt, etc. Last year

I did the medical pre-pay thingy where they take money out of your check

pre-tax and you have to get reimbursed. In hindsight, in the tax bracket we are

in, letting them float on our money and having the chore of sending in the stuff

for reimbursement was not worth the piddly dollars we saved on taxes on it.

We aren't anywhere near poverty level but we are struggling, and we qualify

for nothing. Struggling is probably an exaggeration, but in 2002 we bought a

house, had another child, bought a (used) van, then three months later DH was

demoted. We watched anywhere from $10,000 to $20,000 just disappear off his

income. We weren't rolling in dough or even saving anything before that. Ouch.

Right now I'm juggling balance transfers from one credit card to another to

keep

as much debt as possible at 0% interest (fortunately, we built great credit

before harder times hit), thinking that when Kate is older I'll be able to

bring in some income.

I waffle between feeling panicked about the debt and feeling like considering

his income and our situation, we aren't doing too badly. We are lucky to both

have parents with some money and they give us the nicer things in life here

and there (big TV, stand mixer), so we don't feel too deprived. I think (hope)

that if things got so bad that we were going to lose our house that my parents

could probably help. But the debt is like a black cloud overhead and it keeps

growing.

DH hates his job and wants to change, and I want him to too, but there's the

worry about the insurance changing and all that goes with that. And though

things are bad at his company I worry about the grass seeming greener elsewhere

but turning out to be stinkweed... Sigh.

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

I hear you! I always know I'll have the copays for , but then when her

non-PID brother gets sick, 2 are on antibiotics, and almost $100 is gone in

minutes, it does hurt. Then my husband wants to know why they can't " just be

sick " without taking them to the doctor (hmmmm ... maybe the IgA Def., asthma,

ear infections, and now my son has been diagnosed with eczema which keeps

flaring up and almost getting into his eyes). But hey, let's just let them stay

sick and get them into the ER so we can pay even BIGGER copays ... haha!

This is a non-PID (but could be PID-related) topic. My son is 7 and never had

eczema until last month. The first doctor said he had an infection from

scratching his arm (which my son says was from mosquito bites this past summer),

and it transferred to his face. He was on antibiotics, and after 2 weeks when

it wasn't better we went back, the 2nd doctor said it was eczema which became

infected (so glad the first one recognized eczema ... NOT!). We got more

antibiotics and a corizone-type cream for his arm (but nothing for his face).

It took about 3 weeks, and now it's just sort of dry and scaly.

I thought eczema was hereditary, and only my nephew (his cousin) has it. The

doctor asked if anyone has asthma (his sister, grandmother and cousin) or

allergies (Mom, sister, grandma, aunt), and said all three are related. I never

knew that (but I bet many of you did!).

, Mom to , 5, IgA Deficient, Asthma, chronic ear/sinus infections and

Connor, 7, Eczema

>

> From: bunneegirl@...

> Date: 2006/01/26 Thu PM 05:40:34 EST

>

> Subject: Re: Best Place to Live?

>

>

[Guest guest]

:

My kids ONLY get/got eczema from exposure to dairy. outgrew this but

had it as a baby/toddler. Kate (non-PID) gets it still, but she's not quite

3-1/2. I don't know of anybody else in my family, DH family, even going back a

ways that has ever had eczema! Don't know if that helps, just another piece of

info I guess!

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 1/27/2006 11:46:16 AM Central Standard Time,

ercokat@... writes:

> That is almost as though they are allergic to dairy?

We've taken to calling it a dairy " intolerance " because was RAST tested

at almost three years old and came up negative for all allergies. I don't

know how accurate RAST testing is at that age, but we couldn't do scratch

testing

because my girls and I all have " demographia " which is a big name for a very

harmless skin condition skin in which every little scratch leaves a raised,

pink mark. So scratch testing would have shown a " reaction " to everything.

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

That is interesting! That is almost as though they are allergic to dairy? I

guess that really what eczema is, I guess, allergy-related?

The funny thing is, Connor has never had it until now (age 7). Someone told me

that her husband didn't get it until he was 50. You have the condition your

whole life, and it might only flare up every 50 years (or so one of my friends

told me). Not sure if that is true or not!

>

> From: bunneegirl@...

> Date: 2006/01/27 Fri AM 11:52:40 EST

>

> Subject: Re: Best Place to Live?

>

>

[Guest guest]

Here's some experience i have had with milk allergies:

Milk allergies don't always show up in rast or scratch testing. I have a 38

year old friend whom had just given up milk and her eczema, bowel issues,

esoniophilic esophagitis, fibromyalgia (sp?) and asthma has improved. Her

daughter, age 7 1/2 was recently tested for milk, no repsonse, but was advised

to omit it and her bowel issues went away, behavior problems improved, eczema

cleared. Milk is a funny allergy. It can create several reactions in people

that mask themselves as other things. Migranes are also heavily related to milk

allergies. Try omitting milk and all food product containing milk components

(caesinates, lactate) and see if symptoms (like eczema) improve. I bet they

will.

Luckily grew out of his milk allergy at 3 years old. It's a tough

allergen to avoid.

Mom to

, 3, CVID (low IgG), asthma, eczema, chronic sinus infections, peanut

allergy, environmental allergies

, 4, healthy

, 7, asthma, eczema, environ. allergies

www.caringbridge.org/visit/thomasreising

Re: Best Place to Live?

In a message dated 1/27/2006 11:46:16 AM Central Standard Time,

ercokat@... writes:

> That is almost as though they are allergic to dairy?

We've taken to calling it a dairy " intolerance " because was RAST tested

at almost three years old and came up negative for all allergies. I don't

know how accurate RAST testing is at that age, but we couldn't do scratch

testing

because my girls and I all have " demographia " which is a big name for a very

harmless skin condition skin in which every little scratch leaves a raised,

pink mark. So scratch testing would have shown a " reaction " to everything.

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very

healthy!)

[Guest guest]

If it were me do a lot of researching on really good LLMD " s and then pick

that state unless you have lots of $$$$ for flying if your chronic. Our llmd

here has closed his practice periodically due to 6 pages of people waiting.

I couldn't survive without with wonderful warm caring man.

[Guest guest]

Where is the best place/state to live in with chronic lyme to help the

symptoms? does any one know? And where is the worst place to live?

We are trying to decide on moving back to Florida, NY, or staying in

TN, but if there is some place better I would like to know.

Thanks in advance,

Anita

[Guest guest]

NY has problems w/getting treatment w/the med. community and to me FL is too

hot and not what you need.

in MO

[ ] Best place to live?

> Where is the best place/state to live in with chronic lyme to help the

> symptoms? does any one know? And where is the worst place to live?

> We are trying to decide on moving back to Florida, NY, or staying in

> TN, but if there is some place better I would like to know.

>

> Thanks in advance,

>

> Anita

>

>

>

>

>

>

> For up to date information about Lyme disease and the known co-infections

> delivered to your email address see:

> Robynns_Lyme_List/

>

>

[Guest guest]

My dream place is somewhere that's warm and dry... But seriously, I

would find a doctor that you like for the chronic lyme and move

somewhere close to that doc. I can't imagine there are many lyme

specialists in TN, but thats just a guess...

cooky

>

> Where is the best place/state to live in with chronic lyme to help

the

> symptoms? does any one know? And where is the worst place to live?

> We are trying to decide on moving back to Florida, NY, or staying in

> TN, but if there is some place better I would like to know.

>

> Thanks in advance,

>

> Anita

>